Patient Advocacy BIG HEADING

We will be sending four Working Party members to the World Parkinson’s Conference being held in Barcelona from 4th to 7th July, 2023. This will be an ideal opportunity to network with delegates from around the world and raise the profile of GDNF. We are extremely grateful to Funding Neuro, Parkinson’s UK and Cure Parkinsons for their sponsorship.

Interesting links to talks presented by GDNF Participant Group Members

Florence Pite Lecture 2018 https://www.youtube.com/watch?v=qRyNrqSkhlI

Lesley Gosden’s talk which starts at 6mins 50 seconds and ends on 20mins can be found by clicking this link.

Patients as Partners 2020 Keynote speaker https://www.youtube.com/watch?v=hC4SR_mTESA

Lesley Gosden opens the 2020 Patients as Partners conference

PD CORE

GDNF IAB

Mission statement

To provide strategic oversight of involvement to ensure the views, experiences and needs of people with Parkinson’s are integrated in the development of a new trial for GDNF.

This will include:

– Identifying when and where involvement will have the greatest impact

– Planning high quality and meaningful involvement activities and evaluating the impact of involvement throughout the project

Vision

To pioneer an innovative approach for patient and public involvement and share our learnings to improve involvement in clinical trial design for future clinical trials

Become a PD Avenger – copy text from “What Can You Do” page

GDNF Working Party

Strategic Plan for The GDNF Participant Group’s Campaign to end Parkinson’s

Our Vision:

Ending Parkinson’s

Our mission

To build a sense of urgency to end Parkinson’s by uniting science and People Living with Parkinson’s in an atmosphere of collaboration and mutual respect.

Aims

To raise global awareness and a belief in the progress being made in proving neurotrophic factors to be a potential disease modifying treatment.

 To raise funds internationally to support research into Neurotrophic Factors.

 To recognise that quality of life matters by having a properly funded and approved trial within twelve months and to ensure that PLWP are an integral part of all future trial design as equal partners, and that lessons are learnt from previous trials.